February 2024

Update from the CEO

‌Welcome to the February edition of Down Syndrome Australia's e-news.

DSA is very excited to announce our new Patron for World Down Syndrome Congress, actor Guy Pearce. Guy is a beloved Australian actor who is known internationally for his work. He is also a devoted brother to his sister Tracy, who was born with Cornelia de Lange syndrome – a rare chromosomal condition. We are thrilled to have Guy’s support for Congress this year.

If you have not registered for Congress yet, a friendly reminder that the early bird rate ends on World Down Syndrome Day – 21 March 2023. Hosting Congress in Australia is a once in a lifetime opportunity, so I hope you join us. It is going to be an amazing opportunity to connect, learn and create positive change in our community.

Speaking of World Down Syndrome Day, the DSA team has been working hard to plan an important national event to commemorate the day, as well as planning our projects and advocacy for the year. I look forward to sharing more details with you on all these areas in the near future.

For those families with school-aged children, I hope that the return to school has gone smoothly for you all. 2024 feels well and truly underway, and I’m very excited for what is to come.

Sincerely

Darryl Steff

CEO

Down Syndrome Australia

World Down Syndrome Congress

What's coming up at DSA

NDIS

Join Down Syndrome Advisory Network Member Lisa to learn about the NDIS!

This workshop is for people with Down syndrome to learn about the NDIS.

We will talk about:

What is the NDIS
Goals and NDIS plans
How people use their NDIS plans

When: March 6, 2024

Time:

12.30pm - 1.30pm WA
2.00pm - 3.00pm NT
3.00pm - 4.00pm SA
3.30pm - 4.30pm ACT, NSW, VIC, TAS

Please register here

Information

This is a photo of a doctor with a patient

Medicare urgent clinics

Finding a doctor that bulk-bills has been increasingly difficult for many families across Australia.

If you need care quickly, you might like to try the Medicare Urgent Care Clinics.

These clinics are for people who are experiencing illnesses and injuries that are urgent, but not life-threatening.

Find out more about these clinics, and if there is one near you:

Medicare Urgent Clinics

HPV vaccination information

The Cancer Council has released a new resource to improve the human papillomavirus (HPV) vaccination experience for children with disability.

If your child needs a HPV vaccination, this toolkit might be helpful:

HPV vaccination toolkit

Survey

Monash University study

Researchers from Monash University are taking part in an international project to understand the experiences of parents of children with disability in relation to education.

Parents and caregivers can contribute to this by completing the survey below, with the option for interview:

Complete the survey

Advocacy

DSA summary of the Disability Royal Commission

The final report of the Disability Royal Commission delivered 222 recommendations. DSA has put together a brief summary of the key issues for the Down syndrome community that DSA is focusing on.

You can read the summary here, as well as further information on DSA’s advocacy:

Disability Royal Commission summary

‌World Down Syndrome Congress

Patron announcement: Guy Pearce

We are excited to announce internationally acclaimed actor, Guy Pearce, as a patron for World Down Syndrome Congress. Read more about Guy on the Congress website.

About Guy Pearce

Early bird

Reminder that early bird closes on 21 March 2024, which also marks World Down Syndrome Day.

Opportunity: Volunteer Co-ordinator

Do you want to be part of making WDSC 2024 come to life?

Volunteers are a critical part of Congress and we need someone to help us to recruit and organise our volunteers for this once in a lifetime event.

This is a voluntary role between now and the Congress in July. Time commitment will start at a few hours a week, building up to a day or two a week as we get closer to Congress.

Responsibilities will include:

helping in recruitment of volunteers
establishing an on-boarding / registration process for volunteers
co-ordinating the roles for volunteers
co-ordinating uniforms
induction and co-ordination at the Congress on 9-12 July.

Ideally candidates will be based in south-east Queensland.

Please note if you are interested in being a volunteer at Congress we will put out a call for volunteers closer to the time.

If you are interested in helping make WDSC 2024 a success and would like to find out more, please contact Liz Willis at liz.willis@downsyndrome.org.au

Congress information pack

If you are considering coming to Congress, you will want to check out this Information Pack. It includes information on what Congress is, and how to use NDIS funding to attend.

View the information pack

Down Syndrome Australia is the national peak organisation for people with Down syndrome and their families. We work closely with the State and Territory Down syndrome associations to provide advocacy, support, and information.

Down Syndrome Australia is proud to receive support from the Australian Government's Information Linkages and Capacity Building (ILC) Grant program, in order to deliver a wide variety of projects to support people with Down syndrome, their family and supporters.

Please get in touch if you have feedback you would like to share with us.

You can reach us via email at info@downsyndrome.org.au

Down Syndrome Australia and its members acknowledge the Traditional Custodians of Country throughout Australia and their connections to land, sea and community. We pay our respect to their elders past and present and extend that respect to all Aboriginal and Torres Strait Islander peoples today.

Down Syndrome Australia, 552 Victoria Street, North Melbourne, VIC, 3051

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